Guardian piece on ME by Nick Duerden, mentions PACE 'controversy', includes quote from Chalder. Bit of a nothing article.

[Adrian]

That quote from Chalder: ''This is simply a rehabilitative treatment to help manage the symptoms more effectively.” is disingenuous, given her claims of 30% recovery.

Not only the recovery claims but the claims in the manuals (which they seem to have removed from public view) where CBT and GET claim to be curative where as APT and SMC claim to help with symptoms and allow the body time to recover. This difference in expectation setting is one of the things that is likely to introduce reporting biases into the subjective results.

They can't just tone down their claims because they were fundamental to the structure (and bias in outcomes) of PACE.

 

[Adrian]

Yeah... sad that's seen as a step-forward, but it's not long ago the Guardian were promoting the BS claim that "According to the police, the [ME/CFS] militants are now considered to be as dangerous and uncompromising as animal rights extremists."

They also published an article from White after the initial reanalysis of the recovery results and ignored complaints that it was inaccurate.

 

[Sean]

It is better than the Guardian's usual standard on this subject. I'll give it that.

 

[Dr Carrot]

Not only the recovery claims but the claims in the manuals (which they seem to have removed from public view) where CBT and GET claim to be curative where as APT and SMC claim to help with symptoms and allow the body time to recover. This difference in expectation setting is one of the things that is likely to introduce reporting biases into the subjective results.

They can't just tone down their claims because they were fundamental to the structure (and bias in outcomes) of PACE.

Have these been uploaded anywhere for viewing?

 

[Barry]

Not only the recovery claims but the claims in the manuals (which they seem to have removed from public view) where CBT and GET claim to be curative where as APT and SMC claim to help with symptoms and allow the body time to recover. This difference in expectation setting is one of the things that is likely to introduce reporting biases into the subjective results.

They can't just tone down their claims because they were fundamental to the structure (and bias in outcomes) of PACE.

 

[Barry]

Have these been uploaded anywhere for viewing?

See above. May already be elsewhere.

 

[Andy]

See above. May already be elsewhere.

I'll put uploading them to MEpedia on my to-do list.

 

[Cinders66]

I've never seen anything by Chalder treating the illness as largely biological or acknowledging any biological underpinnings

addressing fears and beliefs as CBT for CFS does is psychological treatment.

She doesn't understand why patients don't like her trials- I'm sure tuller has written to her about selection criteria, lack of objective measures and issues with underlying hypothesis.

 

[Dr Carrot]

See above. May already be elsewhere.

Gosh that’s a lot to read. Thanks very much, I think I’ll have to tackle this over a series of weeks, haha.

 

[Barry]

Gosh that’s a lot to read. Thanks very much, I think I’ll have to tackle this over a series of weeks, haha.

I've most certainly not read it all by any means, but dipped in as and when. Although this information has been around a long time, I realised from @Andy's post there will be many people here in S4ME who've maybe not seen it. Very enlightening some of it I think, especially noting some of the authors and what they have said since. Much of the information is replicated across the four manuals.

 

[Barry]

Just a thought @dave30th:

The PACE papers are of course the authors' statements of what happened during their trial, and their interpretations of the eventual outcomes.

The PACE manuals on the other hand, are clear statements of the presumptions and intent behind PACE, and in many ways aimed to instill a mindset into both the therapists and in turn the participants, via both the interventions, and the way those interventions were applied. Statements of clear intent before the trial began. It just feels to me there might be some mileage along the way, possibly, to come at things from this angle, especially in the light of some of the statements made be the authors more recently.

Like I say, just a thought.

 

[Trish]

I think @dave30th included stuff about the PACE manuals in his original PACE analysis, @Barry. I could be wrong, it's a long time since I read it.

 

[Barry]

I think @dave30th included stuff about the PACE manuals in his original PACE analysis, @Barry. I could be wrong, it's a long time since I read it.

Yes, understood. But quite a lot of water under the bridge since then, and I was just thinking the manuals give an unnervingly clear insight into the way the trial was run and participants (and therapists!) were primed, before and during the trial. I was wondering if now, there might be some mileage in running an article that focused on this aspect, homing in on the manuals rather than the papers - the premeditated intents that seem to often be downplayed or denied. I also think that during the last year or two there will be a wider readership, who might pick up more on this if not lost amongst the rest of the PACE material. But I'm by no means certain.